Book club!

The geek in me is very excited about joining a book club this week!! 

Ok, it's not quite as nerdy as it sounds (it is).  I have some mummy friends who got together (virtually, sadly there is no physical meeting for tea, cake & face to face gossip) and decided to set up a book club to give them all a little break from the daily grind of children / work / chores etc.  

Basically, each month they select a book that everyone buys / borrows / downloads and then reads at their own pace.  At the end of the month they can then chat about it and give their opinions on the characters, storyline, the writing style etc  The book will be from a different genre each month to expand everyone's reading spectrum and anybody can make suggestions about future books to read.  

I love the idea! 

I love reading; I've been a book worm forever. I would much rather curl up with a good book than watch tv and you can learn so much from them, even in fictional chick lit!  

When you've had children and are perhaps no longer so career focused it's easy to lose yourself in the everyday jobs that go with being a wife and / or mum.  There's very little time in most women's (ok, and some men too) day to day lives to make time for themselves but doing this with lots of other people in a similar situation kind of forces you to find that 20/30 minutes a day to take time out and just sit for a bit; a rare luxury.

So, I'm in - yippee!

January's book is 'Necessary Lies' by Diane Chamberlain - I'm a bit late joining the group so I've only downloaded it today but I will give it a go and review it at the end of the month.

If you've got any 'must read' books, let me know and I'll add them to the list :)

AFUK x

Mundane jobs

I'm very good at procrastinating when it comes to household chores - they are monotonous & boring and the longer I can put them off, the better it is...until I can't put it off any longer and realise if I'd just kept on top of things it wouldn't take me hours to do each time!!

So, whilst putting off doing the hoovering this morning I thought I'd check my emails - an everyday job that can take me hours as I'm easily distracted by other websites.  Anyway, I suddenly noticed that I have over 19,000 unread emails. No, that isn't a typo. Nineteen thousand unread emails!! How did that happen?? 

Now I know I'm lazy - if it's a general update email or a newsletter type one (ie from Groupon, Twitter / Facebook notifications etc) I just look at the subject line and if nothing grabs my attention I don't both opening it but seriously? 19,000+ times I've ignored messages?!! Wow!!

I decided to go back to the start of my emails and there's some ranging from 2007 but it's clear that I haven't deleted a single email since the beginning of 2009.

So I've spent the better part of my morning setting up folders for the emails that I need to keep and deleting the really obvious ones that I don't need.  Now to filter through everything else to see what can be binned and what should be kept. Anyone notice that I've put that job off to write a blog post about it haha?!

Anyway, I might be some time - you may have to send out a search party for me ;)

Hmm, all of a sudden the hoovering seems quite appealing...


AFUK x

Retinitis Pigmentosa and me :)

I mentioned in my intro a few weeks ago that I have a disease called Retinitis Pigmentosa. I thought I should give you a bit of information about it, how it affects me and what the future holds.  It's a bit complicated but bear with me and hopefully I won't bog you down with lots of scientific info that I don't really understand myself - I am not a doctor so this is just what I've learnt through my own experience with the disease and you'd obviously have to seek proper advice if you think any of this relates to you (it's unlikely but still, you never know!!)

So, what is Retinitis Pigmentosa (RP)? RP is a name given to a group of inherited eye diseases affecting the retina - that's the bit at the back of the eye that sees light and transfers the images to your brain via the optic nerve (sorry, I'm sure you already know this!).  Basically, in simple terms it means that the rods (the bits of the retina that see dim light) and the cones (the bits of the retina that see light and colour) start to break up and die causing permanent damage.  As these cells start to die you start to lose areas of sight; usually peripheral vision first so you can end up with tunnel vision but it can eventually lead to total blindness. 

Normally the first symptom of RP is night blindness so it may be noticeable all of a sudden that it's not easy to adjust to low lights like in a cinema or you may find it difficult to see very well at night.  Another symptom is clumsiness - so you might find yourself tripping over things on the floor or walking into door frames more often, this could be due to the loss of some of the peripheral vision (you might just be clumsy though hehe). 

Alternatively, like me, it could just be picked up over a number of years by your optician noticing changes at the back of your eye - when the cells start to die they are no longer a healthy orange colour, they go brown / black so you end up with spots of this pigment dotted around your retina like this 

Photo from esciencenews.com

Once you have symptoms you then have to have tests to try and get a diagnosis, which isn't always easy. There are many types of tests from visual field tests (you look in a machine at a fixed point and press a button when you see random lights flashed around you) to electro-diagnostic testing (you can be attached to various machines with 'contacts' on / in your eyes to measure what is getting through to your brain - very sci-fi!)

Most types of RP are inherited although sometimes you won't know anybody in your family that has it - we think I'm the only one in my family to have it although I know very little about my paternal grandfather so it's possible it came from there.  

There is no cure or treatment for RP at the moment. So far over 100 genes have been discovered that cause or contribute towards it so it's very complex but there is lots and lots of research ongoing at the moment - I'm hopeful that one day there'll be a breakthrough. 

So that's a brief explanation of what it is. Now, the bits that affect me! I was first referred to a specialist when I was about 12 / 13 years old - my optician had noticed some changes in my eyes and wanted them monitored more closely, which was done at the local hospital for a few years.  When they decided that things had changed again they referred me on for further tests and I eventually ended up at Moorfields Eye Hospital in London.  After 6 long years I was finally diagnosed with Sector RP - this means that you just have the disease in one part of each eye and it is non-progressive so I was discharged, fantastic news for me! 

Fast forward 10 years or so and I have been getting along fine; still no typical symptoms and apart from the field tests that I have to have for the DVLA to check that I am still legal to drive it hasn't really affected my life.

Until last year!

I decided that as I now have little man I should ask for some genetic testing to see if they could identify any faulty ones in me and if he has them too.  I spoke to my GP and asked for a referral back to a specialist and I saw a new consultant at my local hospital in May 2013.

Unfortunately, it seems that my initial diagnosis wasn't correct and I don't have the 'Sector' variation of the disease as it has progressed and is now affecting the whole of the periphery of both of my eyes.

It was a bit of a shock and it's taking a little bit of time to get my head round it as the thought of going blind is terrifying as I'm sure you can imagine but I'm trying to be positive about it - it's not life threatening and I know it's going to happen so I have plenty of notice :)

Anyway, now we're going back to basics and having all of the tests done again to try and determine what type of RP I do have.  I don't actually mind this bit - I find it fascinating and sometimes it just feels like it's happening to somebody else.  In September I went for my first set of electro-diagnostic tests at the nearest Neurological Centre and earlier this week I was back in London at Moorfields Hospital for the second set and for photographs to be taken of the back of my eyes.  None of it hurts me although a couple of bits are uncomfortable / irritating because there's things in your eyes - a bit like when you have an eyelash in your eye and you can't get it out!

First set of electro-diagnostic tests in September!

There are positives of course - I have found some great charities & organisations that have really helped me understand the disease and have found lots of people through online groups who have it too and cope brilliantly in every day life, they really are an inspiration.  The most helpful one so far for me is RP Fighting Blindness - they have a great website with lots of information and you can follow them on Facebook and Twitter too.

So, I'm back to see my consultant in March with the results of these tests and will update you then on how things are going - fingers crossed it hasn't progressed too much :)

AFUK x

Change

So I mentioned in a previous post that I'm not very good at sticking to new years resolutions.  I hate the pressure of trying to think of something and in years gone by I have just made things up at the last minute because I 'should' - pretty much setting myself up for failure before I've even begun!  

A little while ago I realised that resolutions weren't just for a new year and I made a decision to not only change my life but to really live it.

I'll give you a little bit of background info. A few of years ago I worked for a finance company - I enjoyed my job and was having, what I considered to be, a good career.  The retail side of the company closed suddenly and over the next 3 and a half years the finance side was also slowly wound up.  The best thing about those years were the people I worked with, many of whom I considered close friends.  When I was nine months pregnant I was made redundant - it was expected given the company situation (there was only couple of months left before it closed completely) and absolutely fine, in fact back then the timing couldn't have been any better for me personally.

Anyway, three weeks after leaving, my little man arrived and my world was turned upside down. Unfortunately, this wasn't to be a good time for me.  I had a traumatic birth and was diagnosed with post traumatic stress disorder a few months later.  After struggling on to the point of collapse I was finally also diagnosed with post natal depression when my little man was 9 months old.  Things got a bit better after my diagnosis; I got a part time job in a supermarket - something that was a bit alien to me at first after years working my way up in an office job but it turned out to be my saviour and I'm still there now, loving it - I started to get out more and meeting other mums with babies a similar age to mine and was beginning to feel a lot more like my old self.

It wasn't until June 2012 that I realised that whilst I was feeling better I still wasn't 'living', I was just getting through each day and not really noticing that time was passing me by.  I loved my little boy to pieces and we had a good family life but I wasn't really appreciating it. 

In June 2012 a friend of mine passed away. She was 29 years old.  

In June 2012 a friend of mine passed away.  She had an 11 week old baby girl. 

At the time I learnt of her passing, I was on holiday with my family.  We were happily sitting in a restaurant on the shore of the Mediterranean, soaking up the sun and having lunch.  I happened to log into my Facebook account to catch up with my parents and noticed a message from a mutual friend.  I was in shock for the rest of the day and had a bit of a breakdown later that evening.

We had worked together at the finance company and had kept each other going in that last year when things were tough and we all mucked in doing anything that needed doing, even though sometimes we didn't have a clue what we were up against! 

After we both left the company our lives moved on in different directions and we didn't keep in close contact but we would chat on Facebook and stop for a natter when we saw each other out and about.  I was so happy for her and her husband (also a colleague) when their baby girl arrived.  Just 11 weeks later she was gone, taken by cancer.

The day we arrived home from our holiday I swore that I would make the most of this life.  I would make as many memories as I possibly could for my little boy, I would be thankful for my family, my friends and every day I have with them.  We will see as much of the world as we can, despite my ridiculous fear of flying, we will enjoy days out and not feel guilty that we are doing it when we should be saving for a rainy day. 

Towards the end of last year I lost my way a little bit.  Things changed in my life; new people arrived into it and old ones, who I thought would be there forever, left.  I doubted myself a lot and felt guilty for things that I didn't really understand.  I forgot about all the good things in my life and started to wallow in self pity that things weren't going my way.

Last month I was reminded that life is short.  I don't have an infinite amount of time with those that I love and I shouldn't waste it moping and feeling sorry for myself.  

So, this year - for the first time in many years - I am making a resolution for the new year.  I am going to get fitter and healthier and I am going to remember the promise that I made to my friend.  I'm going to live my life and I'm going to make it a bloody good one!

In June 2012 a friend of mine changed my life forever yet she will never know it.

Thank you B x